Updated March 2, 2002
Hi to whom is reading, I'm writing to tell you of my cancer, chemo, recurrence and now of my long awaited remission. It is hard to think now that it has been over a year since I was first diagnosed with cancer but here goes my story.
I was 22, it was August 2000 and my year was going perfect. I had only just returned from a holiday overseas when the pain really started to begin. I left it a month or so, I was too young to have anything seriously wrong with me. I was invincible or so I thought. That all changed the day my Urologist said those unimaginable words, "You have cancer".
This came about thankfully due to my doctor, who I had run into a day before in a lunch break from work. She made an appointment for me to come in the next morning to have an ultrasound. We both were hoping it would be nothing much.
The next morning I'm in a paper gown, the tie had fallen to the floor, and I was walking bare arsed around the corridors of this radiology centre. I had to drop my pants before to a doctor who examined my nether regions like a connoisseur at an art exhibition. The gel was lathered on, which I must say wasn't all that unpleasant, and I was with a half chubby by the end of this 30 minute examination. She even had someone else come in to give a second opinion on an image upon the monitor. I didn't think this was a big deal at the time.
That day my doctor called me at work and said I needed to see her. I went and she made an appointment for me to see a Urologist as there were some suspicious findings on the scan. After seeing her I walked out of the office, somewhat jaded but still oblivious to the severity of what was to come. I immediately opened the report and saw a few words which are still stuck solid in my mind, "certainty of malignant appearance." I froze, shocked beyond belief. I didn't know what was happening, where I was, or what would happen. I was standing in the middle of a Sydney city street with people passing by, and I had uncontrolled tears trying to comprehend whether this was real or not?
That afternoon the Urologist said it looked malignant and we need to investigate it further. He was calm and collected and sent me down for blood tests, chest x-rays and a CT scan of the abdomen. I still didn't tell anyone as I just had to know for sure the diagnosis and there was no need to let others worry with me.
In hindsight, this was probably a mistake. The following day I heard the news and returned home to tell my parents that it looked quite probable that I had testicular cancer. They were great, we popped a few bottles of champagne (To celebrate? A sarcastic YES!) that night, I think we all just didn't know what to do. It was quite strange, as I really didn't sweat it after the initial shock had passed. I just wanted to start whatever treatment was coming and start it immediately.
To cut this long story short here, I had the surgery. They gave me a shave--Brazilian style... yep not a hair in sight left!! The testicle was malignant. I had a nonseminoma with yolk sac tumor, immature teratoma and choriocarcinoma mixed together. The CT scans had revealed that it had spread to my abdomen with 2 lymph nodes there around 3cm.
It just seemed to keep coming. It didn't rain, it poured. It now seems like it was all like a cumulative effect. I first had to think it was more than a lump, then maybe it was malignant, then it was malignant?
For me to try to explain in words what chemo was like just wouldn't do it justice. It was nothing short of evil. I had weeks on end of sharing my day with the toilet bowl. I slept little and irregular hours. Minutes of nausea felt like hours at a time, my showers eventually ended up with my laying on the floor in a ball. I just hadn't enough energy to stand and if I'm irritable at all these days then this would have been a good day for me during the aftermath of chemo.
By the time my second treatment was over I spent a great deal of time just rolling on the floor trying to subdue the sickness listening to music all day every day, wherever I felt the most comfortable is where I would stay. I was re-admitted three times to hospital after being released post the three days therapy. One time I went into these fits where I couldn't control my legs or arms (Leukocytopenia--my blood count dropped to its lowest ever.) It was after my third cycle of chemo and I wasn't sure if I could handle it anymore.
No matter how positive and charged I was to take it head on, at the end of it I felt like I had stretched myself beyond my means. I wish I could say I was positive the whole way throughout it but in all honesty at the end I was psychologically losing the energy I had at the start. In saying this the strange thing with the chemo is when you feel the worst it's really the time when it is doing its best.
I wish I could say the medication stopped all the symptoms. They tell you these days they can control all of them, but for me that wasn't even close. My happiest day was in Jan 2001 when they pulled that catheter out from my arm. I knew I had been through the fourth and last cycle of treatment. As sick as I was, I couldn't help but smile for the fact it was near over.
3 months after this I had returned to work, my hair had started growing back, and I was feeling good. I was in remission! My scan results, although showing tiny residual tumors, were nothing to be concerned about as they had nearly shrunk to nothing. My specialist thought they would not even be evident on my next follow up. I do miss that feeling--it was nothing short of the greatest feeling I have ever had. Everything was brighter, smelt better and tasted better. To sleep without waking up was like I had never experienced before, I loved it.
My first follow up in March was good, nothing too suspicious, but I still had the remaining masses in my abdomen. The lymph nodes, which had nearly dissolved, were still there, but it was still great. My birthday then was a memorable one.
In August I again had tumor markers, chest x-rays and CT scans done. I went off to see the Urologist for what I hoped was even greater news. It didn't happen.
I was told my lymph nodes were slightly larger and I would need surgery... this time a RPLND. I had trusted my body before and it had let me down. Now I was wondering whether it would let me down again. I knew, though, that if I could go through 4 months of chemo and survive, then this would be a walk in the park.
Psychologically I was just trying to deal with the fact that if even one of the lymph nodes showed any malignancy, then I would need salvage chemotherapy. I had been advised that a small incision would be made and if they were just fatty tissue they would not need to complete the full RPLND, I would not find out any of this of course until I woke up. [Editor's note: Cancer free survival is higher when they actually do the complete RPLND.]
When I woke up from the surgery, I had at least 40 staples from my abdomen to my chest. I couldn't move much or talk and was somewhat off in another world, thanks to my good friend Mrs. Morphine. I had a tube through my member, a tube in my stomach draining the lymphatic fluid, plus a tube in my nose to allow me to be fed and, of course, those much loved drips you get used to right in your arm. Each time I would be in pain I would extend my digit to drill another shot of friendly morphine into my system.
Coming off this drug, however, was painstaking. I began to admire its efforts and thought we could be friends for life?? (If this makes me sound like a drug junky then so be it.) I was in for 9 days, and the worst of it was waiting to hear the pathology of all the tissue removed. They had sent part of the tissue results they were unable to identify overseas and I was anxious as ever to know the results. Well, it gets better: they were clear! I was finally over the worst of it and now it was just recovering. To laugh, to even try sitting up was a problem... which became a problem upon having friends visit. I couldn't help but laugh but that soon turned into pain, which then kept me quiet again.
Upon getting home I was still feeling off but put it down the fact I hadn't eaten in nearly 2 weeks, so I just laid up and tried to take it easy. Over the next 2 weeks it got worse and the nausea was sickening. I went to see a doctor, and they had me admitted for scans. I had a build up of fluid in my abdomen. I was once again re-united with Mrs. Morphine... Damn I had missed her. It was great, I even managed to use my phone in the ambulance on the way to the hospital after they administered a shot of that liquid gold. They kept me in for 5 days and I had the fluid removed by fine needle extraction. Immediately I was starting to feel better and upon returning home slowly went back to good health.
It's now March 2002, I have my next check up in three weeks. My tumor markers came back clear yesterday, I feel normal once again and I can't complain.
I haven't mentioned a lot of the people who I would like to thank throughout all this as I will probably miss someone. In particular a special nurse who I admire a great deal, her help and care really made me feel human on returning to the place that I dreaded so much every three weeks. Another person in particular is a friend and someone I had met through work, I can never repay her for all her help, care and affection. Without her I really don't know if I could of made it through the same way I did... One of the few people you really thank for meeting in your life. Also to a girlfriend at the time who never doubted anything about what I had, where I had been before and even through the recurrence was there day by day for me and in hindsight kept me together, thank you. Of course, to all my direct family and friends, luv you all till I die. Well I have dribbled long enough here, time to move on with it. I hope whoever reads this or goes near similar experiences is as lucky as I was.